Mana Whaikaha update December 3

I have this week had the opportunity of both meeting with families who are struggling deeply with the challenges presented to them as a result of their disabled child not being able to access the education system, with little support then being provided to enable the family to sustain the situation at home. Also of meeting with a group of service providers really struggling to understand how they might be able to change their service models and the ways in which they can offer services in order to be able to be more responsive to the real needs of people, not just the services as they are prescribed in a contract. 

This encapsulates much of the challenge that we are facing as we seek to give more authority and opportunity to disabled people and families over their own lives.

There is no doubt that we live at a time when there is much emphasis on seeing people with a disability as being people just like everyone else. This is a most welcome development, as people with a disability have suffered greatly in not being seen as fully human, and not being treated as unique and interesting individuals in their own right. All of the attention has seemingly gone to endlessly evaluating what people are not, what people cannot do or become, rather than unleashing the hope and potential in people’s lives. It is almost always true that people will tend to underestimate, rather than overestimate, what could be possible in life for people with a disability. The Enabling Good Lives and System Transformation are a reflection of this recognition.

However, it is also very clear that the lives of people living with disabilities are often still not lived to their potential.  Not because of any personal limitations that the individual may have but, because those of us responsible for the promotion and development of what might be possible in their lives, including families, are ourselves beset with fears, with anxieties and with stereotypes, and have limited vision of the potential that disabled people have for a full and purposeful life.

Even families, who have the deepest commitment to their disabled children, professionals, and disabled people themselves, we often foreclose too early on the possibilities and, as a result, people with disabilities have very little choice but to themselves settle for, or rather conform with, the limited expectations that are held of them.  For families this often arises from the very real stresses and challenges of managing day to day with the level of unmet need going unrecognised or acknowledged.

Despite this however, the life opportunities of people living with disabilities are better in the year 2018 than ever in human history, and we have not reached this situation by accident. Such change happens when people realise that the lives of disabled people have become stuck. Generally they have become stuck within the very systems designed to support them to grow, learn and develop.   It is only when we come to realise that more is possible, that the life opportunities being offered to disabled people are not good enough, that we are compelled to imagine better and to move towards what is possible.

While Enabling Good Lives will not overcome all of these challenges, it does give us hope that the changes made are leading us in the right direction and that we are building a platform for a better future.

Lorna Sullivan 
Director, Kaitūhono/Connectors team 
Mana Whaikaha.